Why Living With Lyme Disease Feels So Isolating

Some days are hard. Some days are harder. (sound familiar?)

Living with Lyme disease poses a countless number of everyday challenges and no two people experience it the same way. Not only does it not fit the “one size fits all” diagnosis, but it’s also not consistent for the same person from one day to the next.

That’s the part people often struggle with the most: the inconsistencies. It can make this disease hard to detect and even harder to find the right support for, both professionally and personally.

A silhouette stands alone at a window, encapsulating the blurred isolation often felt by those enduring Lyme Disease.

Most doctors take one look at your chart and they see a whole slew of past and present medications. They see that you are actively in therapy sessions and that you are seeing a psychiatrist once a month. They see that you’ve made several recent trips to Urgent Care or the Emergency Room. Perhaps you’re being treated for overlapping diagnosis from fibromyalgia, bipolar disorder, IBS, dizzy spells, autoimmune disorders, to “suspected” MS. Maybe you’ve gone so far as checking yourself into a psych ward or have tried outpatient programs. Your chart shows a misleading note in the margins of one of your visit notes stating; “addictions?" or "eating disorders??”. The answer is no, or maybe yes...but it's not your root issue and those words act as an anchor, holding you back from someone looking further for the real problem.

They read all of this information…this very general, surface-level synopsis of who you are on paper…and what do they conclude? That it’s all in your head.

 What. A. Slap…. In. The. Face.

Your credibility goes out the window with every visit. You ask them to test you for Lyme disease and they either flat-out refuse, or they reluctantly order the test but “warn” you that Lyme isn’t even real. The results come back and your doctor interprets the bands for you, or worse - they don't look at them closely at all. You’re never provided the full report to see for yourself what nuance may be present. Just a blanketed “negative” based on the outdated CDC criteria that’s been globally ridiculed for its lack of accuracy since it’s institution in 1994 (yes, it’s based on data [very little data] from 32+ year ago…yikes).

After all this, you’re told again, maybe more gently, that you need to seek mental health assistance. And at this point, you’re too exhausted both physically and mentally, to stick up for yourself. So you nod your head, fight back the tears, and decide to take your business elsewhere. You feel like giving up, but you keep pushing through because that’s all you can do.

Then you go home and hop on the internet. You start searching for ‘alternative’ treatments. You start doing a deep dive into supplements and ingredients. You join Lyme support groups to find success stories and hope for a connection with someone who can relate to you.

Maybe you try an herbal protocol or one-off therapy like hyperbaric oxygen. You try mindfulness techniques and meditation (because “maybe some of this really is all in my head?” …after all, your Lyme test did come back “negative” didn’t it?). So, you clean up your diet. You cut out gluten and dairy …and nightshades …and alcohol …and refined sugars …and, and, and…

Still nothing is working. You’re desperate and you want to give up all the time. You’ve already spent thousands on alternative remedies and you’re running out of funds and, even worse, you're running out of hope. These are by far the darkest days of your life. You feel so alone and you’re questioning everything.

Some of you have reached out to family members or friends whom you trust, to ask them for help. Some of you are lucky enough to have those people…You’re even more lucky if they listen and believe you. Maybe they see that you physically can’t get behind the wheel anymore and they offer to drive you to appointments. Maybe they even help you with your supplement routines or meal prep. However, for many of us, that sadly isn’t the case. We are often met with a lot of questions and sometimes are even told that we are “hypochondriacs”.

You see, one of the issues in living with Lyme is that some days you feel well enough to go out in the world, but other days you are bedbound to the point that it takes every ounce of motivation and strength to take care of your basic - m i n i m u m - human needs. Most people only see you during the former. You are secluded, withdrawn, and in hiding during the latter. Of course they don’t believe that you’re sick! They only see you on your “good” days.

Living with Lyme is a rollercoaster of symptoms, emotions, and self-confidence. You actually start to question if you’re even as sick as you think you are. You begin gaslighting YOURSELF. The constant inner-battle you’re facing is just as bad, if not worse, than the battle you have with the outside world (doctors, family, friends, employers, etc.).

If any of this rings true to you....please know one thing:

YOU ARE NOT ALONE.

How could we possibly know this? How could we understand how Lyme affects your psyche, your day-to-day life, and your relationships with everyone around you?

Some people know it from reading about it.

Being supported by people who truly know what its like living with Lyme makes all the difference

Some know it from hearing stories online.

We know it because we’ve lived it.

Because we listen to YOU.

Because we believe YOU.

And because many of us have walked this exact road ourselves.

At Lyme Laser, the people guiding and supporting you have experienced Lyme firsthand. Not from the outside looking in, but from the inside, having lived it day after day. And when someone truly unde

rstands what you’re experiencing, the support feels different.